This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all,

I hate this disease for many, many reasons - the first one being that I've got it. The second one being that the so called experts after sixty years of research (and $500m in research funding from the US MS Society alone) still haven't got a clue what is happening, thirdly, that so many companies are making so much money from relatively ineffectve treatments (Biogen's revenue last year from Avonex was over $1.2 billion). I could go on.

But what's really bugging me at the moment is the effort we are making, as sufferers of this disease to identify the best treatment plan. Dignan has done some fantastic work to list all the treatments which are approved or in trial:

http://www.thisisms.com/modules.php?nam ... pic&t=1363

But the choice is mind-boggling (and will increase in the next few years). All I want is treatment to halt this disease in its tracks and allow some repair to take place. But none of the current treatments appear to offer this despite being incredibly expensive.

How is one able to make a judgement? The four ABCRs have limited effectiveness (30% reduction on average on relapse rates), are injected, have nasty side effects (potential liver problems, injection site reactions, flu symptoms etc). The chemo based therapies may offer better effectiveness but the risks appear higher e.g. heart problems and can only be used for a limited time.

Anti-biotics are an option IF the disease has a bacterial cause - and the jury is still out. Some have reported good results others haven't seen any. The same for LDN - some say it works wonders, others say made no difference. Minocycline shows some promise but again no definite answers from the research world.

Some of the monoclonal antibodies look promising e.g Campath which has shown a dramatic reduction in relapses and some clinical improvements. But a death on the trial and no effect on SPMS dampens the initial enthusiasm. Daclizumab (see home page) appears to be good in early small trials at reducing lesions / lesion loads and improving clinical status. But it is being used with the ABCRs - so there is the potential of another Tysabri fiasco. Biogen have recently bought into Daclizumab so a combo is bound to be the option pursued.

Many of the monoclonal antibodies are targetting part of the immune system / inflammation (which may or may not be the primary cause of MS). IL-2, IL-12, T cells, B cells - the list is endless, but which is best?

So over the next 5 years we could have many more treatments on the market - but how much better off will we be? How do we make a choice? Do our neuros have open minds, or will they stick with what they know - the ABCRs.

Apologies for raising questions which I do not have answers to, but I feel that there a range of theories about this disease and a range of current treatments responding to these theories (or in part), but we are in the middle without any real guidance except the help of fellow sufferers (one of the real plus points of this site).

DO others feel the same frustrations me? Does anyone have any approach to making these decision which they could share? Is it right that we should try something for a time and then switch to something else etc etc if things aren't working well?

Any advice much appreciated.

Bromley

Bromley,

Totally frustrated on my end too.

For what it's worth, your presence on this board is very reassuring. Whenever I check in and see that you've posted, I feel like everything is a little bit more under control because Bromley is staying dialed into the latest developments and keeping us posted.

Who are you? Age, dx, occupation. You're in the UK right? Is it true that kitchen cabinets are considered personal property and are not included in real estate transactions? Guess what I do for a living?

Have a good one!

DenverCO,

I'll PM you as I had my rant for the week.

Sorry to the rest for venting my frustrations yet again!

Bromley

Bromley -

Your post, as usual, was so thoughtful and resonated with me. I stumble through some of the same thoughts and feelings, and hearing the decision making process of others here helps me, so I'll offer where I'm at with things in the hopes that it might inform something. (Your post hardly seems like ranting to me and maybe we can keep the discussion going.)

My choices are simplified because I can't take any of the CRABs. So that whole first tier of may-help-but-not-great is removed from the picture for me. So I eagerly look ahead to what is to come our way.

Further limiting my choices is the fact that since I took some Tysabri, I will not be allowed to participate in any clinical trials sponsored by the MS center I go to (along with others, I'm sure). So that means that it is a timing issue: if I start to do less well and want to get on something, I am limited to something already approved in general but could be prescribed off-label for MS (like Campath). I'm doing ok now, so maybe I'll be able to wait for something to emerge from the pack.

While I do concur that the choices will be uncertain and left up to us, I do also think that something is going to happen to narrow them down. (Not necessarily something clear regarding efficacy perhaps, but something like money or conflict will derail some.) And actually, if Tysabri comes back, deciding whether or not to take it will be a big decision for me.

So I guess my approach is to educate myself and think through what the next choice, realistically, for me could be. Right now that means would I go back on Tysabri and would I move on to Campath. I solicit opinions from people knwledgeable tabout MS as well as those whose judgment I just plain value. I also try to remember that my natural inclination is to do something so I must balance that with the real data that might not support that kind of approach. (For me, going on antibiotics falls in this area. Right now, I am not doing it, but I think about it.) Not sure I'm addressing your question, but I hope that description helps.

In the meantime, I do lots of other things that make me feel better (perhaps more psychologically than physically, but that's part of the battle). Diet, exercise, acupuncture, meditation, (trying to gently) educate people I have to interact with about MS, etc. And honestly, reading the posts here often takes the edge off my frustration.

- Arcee

Thanks Arcee,

I was interested in the factors that others take account of. Following my second attack in March 05, I am eligible (in the UK) to start one of the ABCRs. The marketing info of the drugs companies, and some of the research, or personal experience of those taking these drugs, do not always square up. So my first decision, in discussion with my neuro will be which one? The difference in efficacy is not that much so I assume it comes down to how many injections each week etc.

But there are also numerous trials going on and adverts in newspapers which my friends / family send me - these treatments might be more effective, but one could end up injecting saline for 2 years because you had the placebo!

Minocycline looks tempting because it's oral but not sure if my GP would prescribe it for MS on the basis of a few research papers!

I agree with you that healthy eating, exercise (where possible) etc can only help. I am fortunate that I have not suffered from heat intolerance so will get some sun when I am holidaying in Florida in a couple of week's time. This made me feel almost back to normal last year (my first attack was March 04).

I suppose things were much easier before the internet - patients went to their doctor who sent them to a specialist e.g. consultant neurologist. However, I find that some of these experts are not as expert as they think - my first neurologist told me that vision problems were rare with MS and that cognitive dysfunction occured in late disease. Ten minutes on the web showed this to be outdated information (unless he was trying to be nice!). But it did cast doubts in my mind as to whether I would be offered the most effective treatment, or just what he had always prescribed.

Once again, thanks - I sometimes need assurance that I'm not the only one trying to wrestle with these decisions which, at the end of the day, could have a real impact for one's future.

Bromley

Denver, Arcee:

I'm with you. I look for Bromley's posts and feel calmed by them even though some might think them stringent. He gives our frustrations a voice and mine certainly need one right now. I've never taken any drugs and been fine for 20 years but now the monster is rumbling. I called 2 neuros this morning in my new location and got an appt on Aug 24. I haven't seen a neuro since Nov 2001 at the time of my first and only exacerbation since being diagnosed in 1991. I know the neuro will complain that I didn't do anything to prevent what is happening to me now but I say I gave myself 20 years of a normal life. It was worth it to me and it was a conscience decision. I'm lost as to what to do now and as I look to medicine to help me, I don't see help forthcoming. I remember asking my mother when I was a kid, "why do doctors make so much money?" (We were quite poor and it was the perception of a child.) She said it is not for what they do, but what they know. Really?

I understand what you are saying Bromley. I faced this same quandry for two years before I finally felt that I had enough information to make an informed personal decision.

I didn't trust the published CRAB statistics, so I did my own extensive research. In the end, I found that things aren't always what they appear on the surface, and opted out of trying the CRABs.

In the midst of my decision-making, the Tysabri fiasco occurred. I decided right then and there that I was not going to be a guinea pig for trials or brand new medications.

I was finally convinced to try LDN for two reasons:

1. Anecdonal evidence. There were just way too many people that it was working for, to ignore the potential of this drug.

2. The NMSS "Clear Thinking About Alternative Therapies" online brochure information, which defines how to evaluate the various therapies.

I decided to evaluate all the MS therapies, mainstream or not, with the same criteria (even though it was only intended for "alternative therapies"). Why shouldn't all medications be measured this objectively?

LDN passed the test better than any other approach. It is the only drug that is not promoted by a biased pharma company, has been around long enough to be adequately evaluated for side-effects & l/t risks, and is not a profit making venture.

After I tried it (and have since tested it by going off for a few days at a time), there is NO DOUBT that it is providing significant symptom improvement for me. I had two attacks earlier this year, and not a hint of one since I started LDN in May. That's all the proof I need . . . for now.

Cherie

http://www.iht.com/articles/2005/08/14/news/info.php

A really good article from the NY Times. I printed it and I never do that.

Yes, an excellent article, Jaycee, and with a happy ending!

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Wow, that was a really good article. And very timely. I'm feeling the same confusion and concern y'all are discussing. It's actually made worse by the fact that I haven't had much MS occurrence at all--or at least, there's debate about how much I have had (which makes confusion all the more).

Had "mild" ON in January. MRI showed one lesion, possibly one other tiny one next to it. Spinal tap said 2 out of 3 markers positive for MS. Neuro says not conclusive, clinically isolated syndrome. MS specialist says, nope, urinary issues in 2003--you've got RRMS. Neuro says, Avonex? MS specialist says, Avonex!

Two recent MRIs say, lesion(s) healed, no new ones. Hooray! Hooray? What's the role of lesions in MS? No one's sure, though some docs talk like they are.

Based on recent MRIs, neuro says Avonex? Hell if I know. It's downstairs sitting in my fridge right now, waiting for me to give it the go ahead--which I delayed, based on those recent MRIs.

Will see the MS specialist again in September. Will she say Avonex? Or will she say Avonex! Well, they're both arguing over the same drug anyway...

Crickey, it almost makes one wish for something simple, like dismemberment. At least you know what's happened to you. (Not that I'm wishing for that, mind you, Oh Great Cosmos/God/Nature/Fate. Just a joke!)

This is my longwinded way of saying, I feel ya.

My decision process went something like this (I should note that I'm only sharing my experience and I'm not qualified to give any direct medical advice)...

My neurologist handed me information pamphlets on the 3 ABCs that were available then back in late '99, discussed some of the different parameters of them, i.e., different injection schedules, stated that they all had about the same effectiveness, and then asked me to make a choice. I was also presented with the option to be part of the antegrin study group with a 33% chance of being on placebo (though not much seemed to be widely known about it in 1999-2000). Hmm, as you've discovered it's an overwhelming decision.

My first step was to obtain the doctor's prescribing information for each of the ABCs along with a medical dictionary and looked up every bit of medical lingo I didn't understand. During this process I even discovered some information that my neurologist was unfamiliar with, e.g., that Copaxone was found to be clastogenic in a mutagenesis assay (it has the potential to cause breaks in DNA). Anyways, after that I spent somewhere around 6 months learning about MS from textbooks but mostly by reading journal papers including ones focused on the ABCs (working in a cell biology research lab helped a great deal with access to published articles).

After all of this, I chose not to be in the study due to the existence of treatments with known efficacy and I chose to go with Avonex. My choice was based primarily on injection frequency (ruling out Copaxone) and the lack of injection site reactions, Betaseron's literature described the reactions as "injection site tissue necrosis." My first Avonex injection put me through the wringer with the worst flu that I can recall having. Biogen's "Tylenol advice" didn't work for me and I found that ibuprofen was much more effective. Still, I dealt with pretty bad side effects for a bit longer than others seem to though they always clear up within a day of my shot. They lasted about a year and then tapered off during the second year. Now after 5 years I still feel a little tired the next day however I consider these side effects to be trivial in comparison to those I had during that early period.

In hind site, I'm still happy with my choice especially after reading about the problems some folks suffer with Copaxone and lipoatrophy and the knowledge shared with me by a nurse who stated that intramuscular injections have an absorption rate of about 80% while subcutaneous injections are only around 40%. I have also declined my neurologist's suggestion to try mitoxantrone due to its cardiotoxicity (what good is having a brain if your heart doesn't work). One of my few problems is that I'm starting to notice that my hair is a little thinner than it used to be (one of Avonex's stated side effects). To augment Avonex's roughly 30% effectiveness, I've done a bit of research into complementary "alternative" therapies and have devised a regimen for myself that I've described in another discussion thread and elsewhere. This regimen is something that's constantly under development as I learn about new things, e.g., I'm currently considering adding n-acetyl-cysteine and turmeric to the regimen but I may need to get some more blood work done first.

Anyways, I hope that sharing my experience has been helpful for you in your decision making process. If I had to go through it all over again I might still choose Avonex however I would strongly consider getting in the Tovaxin trial if there was some guarantee I would not be on placebo (doubtful I know due to the double blind nature of most trials).

NHE